Back in April we switched treatment protocols because the FOLFOX was not working and to top it off it was making me sick and generally kicking the crap out of me. I didn't really get why it wasn't working because FOLFOX did a great job back when I was first diagnosed over 2 years ago. I asked my doctor about this and he said the disease gets smart and develops an immunity to the drug and apparently that's what happened to me. Luckily we had another hand we could play and we switched protocols over to FOLFIRI.
The FOLFIRI was more tolerable for me at first however things started to go south. Each treatment made me feel worse and worse. I used to be able to recover from a treatment in 5 days then with each treatment it seemed to take a day or 2 longer. I was also developing a fluid build up in my abdominal cavity that was an artifact of the disease in that area. This would cause my belly to become distended and was quite uncomfortable and really killed my appetite. My doctor prescribed what is called Paracentesis. This procedure was quite easy to endure and the relief it provided was well worth it. The procedure is outpatient and takes less than 4 hours. The actual procedure takes about 30-40 minutes depending on how full you are however there is the paperwork phase and then preparation with the nurses and then about 90 minutes to recover because they hit you up with Fentanyl to relax you. So they wheel you in the room, ultrasound your belly to find a fluid pocket, give you a local at the puncture site and finally poke a needle through and start draining. The first time I did this they drained out 4.2 liters of fluid. A week later I was full again and they drained off 3 liters. Subsequently the frequency in which I needed a drain was increasing however the volume of fluid was decreasing.
After the 5th treatment something happened. Treatment was on Monday morning and everything went well. I needed to be drained so they scheduled an appointment for that afternoon. I wasn't out of the hospital until after 5PM and logistics prevented me from being hooked up to the 48 hour 5FU infusion. I wasn't feeling great and went to bed early. I woke up at 2AM with the worse pain I have ever felt. I tried taking pain killers (lots of them) to knock me out but I started getting sick and was unable to keep anything down. In the morning it was off to the ER at Albany Med where we spent the next 12 hours. They did the full battery of tests from blood work to a CT scan. I must have seen about 100 doctors all giving their opinions. The CT scan showed a partial blockage on my small bowel which was reason enough to keep me there for observation. I got to my room around 9:30 PM and met my care team for the evening. My doctor came by to see me and I asked him what my prognosis was. He told me that the disease was progressing and the treatments were no longer working. I was out of options. Strangely I felt a sense of relief pour over me. The chemo hell was over. No more feeling sick and fatigued. I would be able to say yes to my daughter when she asks me to play with her. Perhaps a some what normal life. Sandy and I had a good cry together as we pondered our future. I knew that I wanted to leave work and spend all my time with her, Olivia and our family. I am at peace with this decision and have no regrets. Time to live and enjoy life.
The nurses came back and told me that they were going to insert an NG tube which is torturous. An NG tube is a vinyl tube that they snake down to your stomach via your nasal cavity and throat. It is very unpleasant placing an NG tube. The nurses and I set out to get the thing in place. After a couple of tries we finally got it in place. Unfortunately there would be no food or drink for me while the tube was in place. Ice chips became my creature comfort. The nurse was nice enough to get me a lemon wedge so I could at least have some flavor in my mouth. The next day they did another abdomen drain and soon I was feeling better. They allowed me a clear liquid diet. Mmmmmm clear chicken broth, lemon jello, and tea. The tea was the best when I iced it. I worked with that diet for a day with tube still in place but not hooked up to the vacuum. I was able to keep the clear fluid diet down with out any complications. I asked for the tube to be removed. The resident doctor came to my room and warned me that if I was to start getting nausea or vomiting I would have to have the tube placed again. I was willing to take the chance because the tube in my throat felt awful. I really wanted solid food as my stomach was really grumbling profusely. My dinner tray arrived you guessed it, clear liquids again. Unfortunately like a naughty boy I was sent to bed without a real supper. The resident told me that he would recommend a normal diet for me. 6AM rolled around and the doctors began making their rounds each one telling me that I could have a normal diet. I asked the nurse for a toasted bagel with cream cheese. That's all I really wanted. Oh yeah and a cup of coffee. I could see the food delivery cart in the hallway and soon enough the guy brought in my tray. You guessed it clear liquids. I complained about this and asked to see the resident. He explained that all the doctors who said I could have solid foods didn't have the authority to grant me that pleasure. I would have to wait for the attending physician to sign off on my chart. At least they gave me coffee on my clear liquid tray. As I was sipping my coffee another tray appeared this time with real food and more importantly a toasted bagel with cream cheese. My wishes had been heard and were granted. I was on the up swing! I had a good day with lots of family and friends coming by to visit me. I kept asking if I could get out by or o Sunday so I could be home for Father's Day. The doctors were all giving me the "let's see what happens". Saturday rolled around and things were looking good. I was keeping food down with any problems and I was feeling a lot better that I did when I first arrived. At this point they decided to let me go home.
I was home and started to feel tired and ended up passing out for the afternoon. The next day wasn't much better and that's when I realized that perhaps I had narcotic hangover. A little to much IV pain killer and a Fentanyl patch can do that to you. I removed the patch and gradually started feeling better. By Tuesday I was on my feet again and have been feeling really good. Spending time with my girls has been great and very therapeutic. I'm looking forward to spending lots more time with them doing stuff.
I am currently working through an issue but it seems to be OK and something we can deal with going forward. I'm feeling the best I have in a long time, a really long time and again looking forward to spending time with all my family and friends. Please be happy for me...
I'll keep my gratitude list short and simple:
Thank you one and all for all you have done and what you will do for me and my family. Lots of love to everyone.
Until next time...